Two pivotal cases in medical ethics Nazi experiments

Two pivotal cases in medical ethics Nazi experiments The importance of protecting human beings from invasive medical treatments was highlighted during the post-war trials. The trials of 23 doctors revealed that many people held in concentration camps had been made to participate in dangerous medical experiments, such as exposure to extreme temperatures, often with fatal results. This led to the Declaration of Helsinki produced by the World Medical Association in 1964, which was to safeguard against future atrocities of this nature. This was revised for the fifth time in 2000 (Christie, 2000). It sets out international standards for conducting medical research with human subjects (Singer and Benetar, 2001). Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

The experiment In the Tuskegee experiment between 1932 and 1972 the US Public Health Service denied effective treatment to 399 African Americans who were in the late stages of syphilis, a disease which can involve tumours, heart disease, paralysis, insanity, blindness and death. The men were not told of the disease from which they were suffering and were, for the most part, illiterate and poor. The aim was to collect information at autopsy so that the effects of the disease in black sufferers could be compared with those in whites. In practice, the results of the study did not contribute to the control or cure of the disease. In 1997 President Clinton issued a public apology for these government-sponsored actions to the few remaining survivors (Jones, 1993).

Principles underlying ethical research practice • Beneficence (the obligation to provide benefits and balance benefits against risks). • Non-maleficence (the obligation to avoid the causation of harm). • Respect for autonomy (the obligation to respect the decision-making capacities of autonomous persons). • Justice (obligations of fairness in the distribution of benefits and risks). Beauchamp (1994) Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

Examples of ethically controversial social research Example 1: Milgram (1974) In an experiment done in 1963 Stanley Milgram was interested in why people were willing to harm other people if they thought they had been ordered to do so. The defence that ‘we were only obeying orders’ had been used by many who had perpetrated war crimes and other cruelties in the Nazi era. Pretending that he was trying to see if punishment affected people’s capacity to learn, unwitting research subjects were required to administer electric shocks to other ‘subjects’ if these people gave incorrect answers to questions, sometimes to the point at which people screamed and begged for mercy. The shocks, though, were not real and the people receiving the shocks were actors. Milgram was able to demonstrate that many people are willing to suspend moral doubts if authority over them is strong enough. Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

Example 2: Humphrey (1970) Laud Humphrey studied homosexual encounters in public toilets by acting as a lookout (‘watchqueen’), not telling the people he studied of his true identity (although he did gain the trust of some after disclosing his purpose). As a covert researcher he could not interview men without revealing his identity, so he wrote down the car licence plate numbers of the men and found out where they lived. Changing his appearance he then interviewed them a year later in their homes on the pretext of carrying out a survey on a different subject. His study contributed to the destigmatization of such men who at the time were harassed by police authorities, overcoming stereotypes that they were predatory in relation to non-homosexuals, for example.

The UK Data Protection Act Stored personal data must be: • Fairly and lawfully processed • Processed for limited purposes • Adequate, relevant and not excessive • Accurate • Not kept longer than necessary • Processed in accordance with the data subject’s rights • Secure • Not transferred to other countries without adequate protection. Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

Questions to answer in an information sheet to participants • What is the study about? • Why do you think I am suitable to take part in this research? • How did you get my name/find out that I was suitable for the study? • Why is this study important? • How will the study be done? • What does my participation in the study involve? • Will this study benefit me? • Are there any risks or hazards involved? • Will people be able to find out my details because of this study? • What if I change my mind or don’t want to be involved? • What will happen to the information I give you? Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

Covert methods • Flout the principle of informed consent • Help erode personal liberty • Betray trust • Pollute the research environment for other researchers • Are bad for the reputation of social research • Discriminate against the defenceless and powerless • May damage the behaviour or interests of subjects • Are invisibly reactive, suggesting, for example, support for the aims of the group studied • Are seldom necessary • Have the effect of confining the scope of research Homan (1991) Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

Examples of ethical issues when analysing contradictory accounts Example 1: Melanie Mauthner (1998) interviewed sisters about their relationships with each other, leading to some difficult questions about voicing and making public some very personal issues. In some cases one sister gave information that she did not want shared with the other. The interpretation of this material was potentially compromised by trying to hold back the confidential parts. Example 2: Miri Song (1998), also working with siblings, discusses the problems of being given competing accounts of the same relationships and events. She describes the difficulties with holding on to ‘oppositional accounts’ without ‘stirring up trouble’ or producing ‘false’ or one-sided accounts. Seale C. Researching Society and Culture. Third edition (Sage 2011) www. rscbook. co. uk

Review questions for Chapter 5 1. What is informed consent and how would you know whether consent is informed? 2. How does reflexivity contribute to ethical research practice? 3. What are the four principles underpinning research ethics outlined by Beauchamp? 4. What special considerations apply to doing ethical research work with children or vulnerable people? 5. What are the arguments for and against covert research?

Workshop and discussion exercise 1 for Chapter 5 Select an issue from the following list (you may want to choose a subject that you are not familiar with, rather than one which you have studied before): • the education of children aged 5– 8 years at school • self-harm in teenage children aged 12– 16 years • community responses to large sporting events taking place locally • responses to being diagnosed with Alzheimer’s disease in adults aged over 65 years • attitudes towards graffiti. Outline possible ethical issues that may arise in your study and describe the procedures you would use to address these.

Workshop and discussion exercise 2 for Chapter 5 You are undertaking a study in one of the areas outlined in exercise 1. a. • • b. You need to gain informed consent from participants (or guardians or carers) in order to do the study. Draw up an information sheet for participants. Draw up a consent form for participants. If working in a group or pairs, role play seeking and gaining consent for your hypothetical study. Swap roles (potential participant to researcher and viceversa). After participation in the role play make a note of: As the research participant: • how you felt receiving the information • whether you felt the issues were fully explained to you • did you feel that you had opportunities to ask questions? As the researcher: • how well you thought the potential participants understood the study purpose and process • did you give opportunities to ask questions? Discuss your experiences. What have you learnt about ethical practice in social research?

Workshop and discussion exercise 3 for Chapter 5 Download an ethics application form from your local research ethics committee / institutional review board. Using one of the topics in exercise 1, draft an ethics committee submission. If working in a group, critically appraise each others’ draft submissions. Record what you have learnt.